Good news stories

It worked!

Friends, family, acquaintances and strangers - thank you for every letter or email written after the request in the previous blog post, titled "Let's Write!" I'm way behind with updating this blog and have been sitting on the update for several days. My apologies. Again.

In short, we needed to ask the powers that be for an extension of the date set for a conference about Bill C-442*.

Jim Wilson, president of CanLyme, wrote:

Our letter writing action worked.  PHAC has agreed with us to send a letter to the new Minister of Health to extend the date of the conference to at least May of 2016.  They called me Friday indicating they had been hearing of many letters suggesting an extension of time and that they will support it.
It should now be a simple rubber stamp of approval for the new Minister of Health (or existing one depending upon the outcome of the election) to extend the date.
Thank you everyone for taking the time to write... we can be a powerful group when needed.

[ * Bill C-442 is the Federal Framework on Lyme Disease Act, which was posted in December 2014. See post ]

 WHAT A PARTY!

Have you ever felt truly humbled and overwhelmed by the goodness and goodwill of people? I'm not talking about bringing a pot of soup when someone is sick, or flowers when there has been a death in the family. I'm talking about people going out of their way to organize and arrange an outpouring of love, a support that transcends towns and counties, spending their time, energy and money to create a festival of fun for people to get together, to show support as we go through a difficult time.

Bonnie is a force of nature with a heart of gold. I think she might be able to arrange for snowmen to dance if she wills it hard enough. When she heard of Arno and I both going through surgeries at the same time (me: brain tumour; him: thyroid cancer) as posted on this blog before, she swung into action. And swept many other friends along with her.

I knew something was being planned and arranged for the end of September, but requested it being low-key, like a potluck with some games and fun somewhere in the open, just outside the city. As the days before and shortly after our respective surgeries went on, I became aware of some whispers and giggles as friends made plans behind my back. I was not about to spoil their fun - they were planning a surprise and why mess it up? I don't even know how many people have been involved with planning and arranging and don't want to offend anyone!

But never in my wildest dreams could I imagine what was being created. When we arrived around 2 pm on that Sunday afternoon, there were tents and tables, chairs and a jumping castle, people milling about playing various games or browsing the used books, someone behind a BBQ to provide food, bowls of chips and snack food, and even a magician. Friends from near and far came over to smile and hug and enjoy our shocked faces. Those who couldn't attend, sent cards and gifts and good wishes.


There was a corn roast with corn and kettle to cook them in, donated by Gord. When I thanked him for it, he simply said, "You are my friend. I do things for my friends." And that was that.


Various groups of friends from different walks of life could meet and mingle and in some cases even say, "Hey! I know you from such-and-such, how do you know them then?"

I tried to take pictures and talk to everyone, but think I wandered around in shock for most of the day.
Below is a collage of only some of the pictures and people. (Click to view bigger)

Oh but wait, there is another good news story! It could have been a tragedy, but it turned out to be an amazing tale to tell - and added to my belief that there is no such thing as coincidence.

Friend Anne B and her husband Trev are long-time friends. We even shared a hotel room together way back in 2000, in San Diego. The three of us. But that's another story.

Trev and Anne were some of the first arrivals at the Fun Fest. She made sure to wear a bright green top in support of Lyme disease. When I looked around for her after I gathered about some of my wits, she was nowhere to be found. And then the story came out.

Trev was chatting with Ralph. Suddenly, one of the annoying yellow bees (wasps / yellow jackets) stung him on his hand. Within minutes, he started swelling. And we were at least twenty minutes from any of the four nearest hospitals. Ralph called for his wife, Anne K, to bring her EpiPen®. It was administered and Anne B took off to a hospital with Trev.

By the time I heard of the story, since friends were hiding it not to spoil our fun, they were at the hospital and Trev was getting treatment. He was put on IV and given another shot. The doctor said it was "a very close call". The EpiPen® gave him time to get to the hospital and for more treatment.

Here comes the amazing part. Anne K usually only takes one of her two EpiPens. Trev had never needed one before. That morning, when Anne K was switching purses, she looked at the EpiPens, noticing that one would expire in Nov. 2015 and has never been used. She decided on a whim to take both along that day. Coincidence? No such thing!

The day ended with a rousing game of horse racing --- involving plastic horses, numbered squares, dice, lots of yelling and much laughter,

It was a day of great fun.
It was humbling.
It was amazing,
It was healing.

If I haven't yet thanked you in person, sent an email or made a phone call or sent a card to thank everyone for what they had done to make this an unforgettable day, please forgive me. Know that we are overcome with your kindness and generosity. We can only try to pay it forward.

Thank you.

Dear Life,
Today I'm thankful for friends,
for EpiPens,
for folding chairs and laughter,
for people who are willing to care,
and for the joy of telling stories.
Marlene

What a hat!

To be home in my own bed, with my own pillow, the cats and quiet - what a bonus! And no, Anne, nobody pooped the bed last night --- but the one cat apparently pooped on the porch this morning and made Arno very upset since there was clean cat litter and scooped boxes as always for him! LOL

For the cat, that is. Not for Hubby. You asked!

Getting home yesterday afternoon, I was sent straight to bed. Started reading some emails and fell fast asleep. Guess I was more tired than I thought I was and sitting up in the car for the drive home was probably exhausting too. 

Had a good sleep for most of the night, caught up with brother Andre at around 4 am our time this morning and saw his wound as well. He has a longer cut but I have more staples, so there! He has 17 and I have 25 .... He is still on soft food and must take a lot of fluid to help flush out the bladder. He'll probably still be in hospital until Sunday. 

Friend Sue picked me up this morning and we went for breakfast at our favourite little shop nearby. Yes, I was wearing a scarf to stop people from throwing up if they looked at my head! The place was full but we managed to find a table. Before we went out, I chatted with various friends and mentioned to one friend where we'd be, not thinking anything of it. 

Next moment, 3/4 through our breakfast, Sue said, "Here comes a woman with hats ..." 

I thought, no, it can't be, but it was! Jan, my crazy, artistic friend who is a whizz with sewing anything you can dream of, had popped in covered in pink feathers and carrying two hats!

The tables were all full but she plonked a hat on my head and we had a good laugh with everyone around us! They were all staring and I whipped off the scarf so she could pop down a hat on my bald pate. She said she was going to make me something to wear after surgery, but didn't expect me to be out so soon and clearly took the idea too seriously!

So what do you think? Sue took pictures with the cell phone.
Pics on the right was when Jan first came in, standing in the middle of the restaurant with the windows behind us. The big one was when the people next to us left and Sue ordered us to pose properly for the camera. As you can tell, we were both very bored with ourselves. LOL

Jan, you are a gem! She had also bought a pink sort of pirate's style soft fabric hat, you can see over her hand, which was then put on under the hat for the last picture. I guess I'll have to get some bright pink stuff to borrow and wear during the upcoming Fall Fair to go with the funky hat!

I am so blessed to have all these people in my life --- THANK YOU!

Of Prayer Shawls, Doxycycline and Vets

Prayer Shawl for a friend

Yesterday I was privileged to pass on a blessing to another friend in the form of this lovely shawl. Prayer shawls - I've found warmth, support, love and emotion in the shawls given to me.  There is one everywhere I go, ready at an instant's notice. The people who gave me the various shawls I use and have used, are special, close to my heart, supporters of my life. It is a gift to share with others, through the many people who spend hours knitting and creating these unique gifts.  

Prayer of Blessing: May God's grace be upon this shawl...warming, comforting, enfolding and embracing.May this mantle be a safe haven... a sacred place of security and well-being...sustaining and embracing in good times as well as difficult ones.May the one who receives this shawl be cradled in hope, kept in joy, graced with peace, and wrapped in love.Blessed Be!

 © 2013 All rights reserved.

By: Janet Bristow - 2000

  www.shawlministry.com

The next bit of this entry is a whine ... so please feel free to skip and start reading at the next bold line! 

My apologies. Disconnect. I'm feeling totally adrift and it has been increasing the last few days or two weeks. Noises from the neck again, which is stiffening up some nights. Sleep problems. Weight ballooning again. Had some weird bruises just appear. Hip pain. Nothing serious or like they were at the height of my Lyme fight. I've been off antibiotics now since February 8, was declared "in remission" on May 8. Everybody tells me how good I look. But I feel as if I'm no use to anyone and as if doing anything is a huge stretch. I try to walk every day, keep moving, even if just up and down stairs several times, but mostly outside to the mailbox on the corner and a bit down the street and back. 

Daily emails come in from people who have been bitten, or sick, or looking for treatment, desperately trying to find a doctor in our area. I'm so sick-and-tired-and-ashamed to write over and over again, there are no MDs available, and all the LLMDs are in the USA. Ours have been pushed out. And then to face the inevitable, "But why????" I'm ashamed because I've had treatment and that there's no easy answer to give to others who are struggling.  

My apologies, my good friends, if I'm absent or seemingly aloof. Don't mean anything by it but am helpless to stir myself. Just find days slipping away, disappearing while I sit and do nothing. Sit in the sunshine on a parking lot. Sit on the bed and almost watch TV. Sit in the car and watch the clouds. Sit with the laptop and look through hundreds of old pictures, but not reading emails or facebook, and not catching up with things like housework. Thanks to the friends who want to go out and meet for coffee, or enjoy a newly discovered place, or spend time at a friendly ball game, or plan to go away for a girlfriends' weekend. The joy I have while being with you, can never be explained. Thanks to my family for not moaning about the lack of vacuuming and dusting. 

Thank you for that and slap me out of my stupor somehow! 

Two upsetting articles to share

Maybe you know about this, maybe not. The first article here below really upset me. I checked with my pharmacy and found that the general price for Doxycycline in our area would be just over $1 per capsule ($82 / 100). A friend in South Africa checked and said the price there is about R25 for two weeks' supply, which translates to about $2.56. 

Now read this: Doxycline prices in the USA suddenly jump through the roof.
Article: Summer is Lyme Disease Season. The price of the drug to treat it just exploded.

Infection of Lyme disease through blood transfusions have long been a question I've asked, but it has always been waved away. A few months ago I spoke to a woman from the Canadian Blood Transfusion Clinic about Lyme disease. She said that someone who knows about a tick bite, should not donate blood for a few weeks, but can donate after 6 months because "the infection would then have been cleared from their system."   

I've now been sick since 2007, and been treated for very much longer than 6 months. Some people have been treated twice as long as I have, and they are still not well. I refer again to the Embers report which was mentioned on this blog in the post from October 25, 2012. 

Quote: "A new study by Drs. Monica Embers, Stephen Barthold and colleagues has found that the bacteria that cause Lyme disease, Borrelia burgdorferi (Bb) persist in monkeys after antibiotic treatment."  Read more 

Ehrlichiosis, Rare Tick Infection, Spread To 9-Year-Old Boy Via Blood Transfusion

 Article in the Huffington Post 

Warnings about tick populations exploding in the USA -- to vets, but not to humans? And any articles I've seen, even talking about Lyme disease, gives information about how to prevent tick bites but say nothing about how to find treatment. According to emails I've received, doctors are still showing patients the door when they come in to ask about Lyme disease. One man said he went in with a bulls eye rash and the tick still attached but he was assured it was nothing. 

Tick populations to explode in 2013

Quote: "For a number of reasons, tick populations in many areas of the country will likely explode this year, according to several parasitologists, so veterinarians should be vigilant about discussing preventives with clients."

Is 2013 the year of the tick?
Article found on the website of a vet's office in Etobicoke, near Toronto in the GTA - once again warning pet owners  LINK


Please be careful and vigilant without being paranoid!  More information always available from the CanLyme website, from the LDAO and other links on those sites. 

It DOES get better!

Pussyfootin' to health in my beloved toe socks

As I'm trying to write this post without being overly dramatic, I hope you'll get the feeling that goes along with it. But if not, please ask or reprimand or comment and I'll try to fix or explain better. For now, I'm softly stepping onto the path of better health.

It is now going for a month of my being off antibiotics. (blog post)  The first few days were giddy ones, feeling like a vacation and freedom, not having to swallow pills every few hours. And then the symptoms slowly started creeping back. I didn't notice so much, or I tried to ignore them, but hubby was ever vigilant. I felt bad for a few days but of course nothing was as bad as it was before.

And that's what I want to say to other Lymies who might be reading here: It DOES get better.
Truly, it does. We might slip back, might feel worse for a few days, but not those horrible, dark, pain-filled days that seem to be never ending as when we are very sick. This I've heard from a few lucky ones who have experienced these golden days, and now I can add my own voice to theirs.

What I didn't realize, is that a meal replacement hubby started me on years ago when I was too sick to eat and didn't feel like chewing or going to the trouble of digesting anything, did more for my general well-being than I knew. We ran out of the powder more or less at the same time as I went off the antibiotics. As I became more run down during the days following, hubby started saying we need to get the powder back and start using it again. It took a few phone calls but we were quickly back up and running.

Almost immediately I felt a difference. After about two weeks it is clear: The powder does help, and I feel so much better for drinking my smoothie again in the morning! I should probably do a blog post about that on its own, but please ask if you want to know. There's a contact button at the top of this blog. If you view this on your mobile device, you might have to switch to the Web version - not sure how everyone's displays work!

BUCKET LIST
Maybe you had a look at my Bucket list before. Items 5, 7, 10, 11 and 15 on the list could probably be scratched out now, since the last two weeks or so!

Examples:
Going out at night (item #11): On Friday, March 15, I enjoyed an evening of darts with a group of friends. I'm no big darts player and am happy when I hit the board, but my husband is and he loves it. On that evening, I closed two games (gasp!) and was promptly dubbed "Hawkeye" by my team captain. It was a fluke, be sure ... but afterwards, we sat and chatted, sharing jokes and taking pictures, and I was in no big hurry to get home to bed. I didn't think much of it until the next morning, when hubby said it was the first time in years that I actually sat and visited with the people after darts instead of being dead on my feet.

Thanks, patient friends, for still allowing me to play sometimes even though I've been a deadbeat the last few years! And Tom, I still believe you were "crying-laughing" !

TV Programs (item # 5): The last week or ten days I've been able to actually follow along while watching "Criminal Minds" instead of having to pull over the laptop and look for a synopsis of the episode. I could do it all by myself! I didn't want to get too happy, thinking it wouldn't last. But now I'm starting to think it might be a sign of getting the concentration back.

Made 11 jars of antipasto and didn't burn anything!

Recipes (item #7): Last Sunday I attended an event at a home with some friends. Girlfriend Pam was hosting and had several goodies to share. I tasted around all my old favourites and then found a mixture with olives and things. It was delicious and I stayed put, munching away, insisting that she shares the recipe. She did and five days later I made a batch of Antipasto myself. Sure with hubby helping to chop, but for the first time in years I was in charge of the pot and the mix, while he was behind the chopping board! What joy! Especially to take a jar full to an event last night and to watch the ladies scoop out every last drop of the mix, commenting to Pam that they need the recipe too. They didn't know how joyful it made me, seeing them smack their lips and knowing that I knew what is in the recipe and could recite it back, as in days of old. Before Lyme, that is.

Concentration (item #15): The biggest improvement that makes me happiest is that the concentration seems to be coming along. So much so that I am enrolled for an online course and have done several of the assignments already and actually retaining the information. Humbly grateful to have that gift again, which I used to take for granted before. Hey, I could even tell a few jokes the other night and remembered them all by myself as before!

Lymies: We have to change the tide and together we can get better. It is such a supportive community and having someone say, I understand, is a powerful gift to receive when you're awash in a sea of disbelief.

I also looked back on my "List of 100" and had fun reading them again, thinking that some of them might get crossed off now in the near future. Always did want to jump out of a plane, so maybe one day.

NEWS ABOUT THE BRAMPTON WALK
Things are getting together! We need a few official sponsors, though - they will come, I firmly believe. I've ordered the small items that sold so well last year at the Walk and they should be here by mid-April.

Confirmation received that Dr. Murakami will be with us on the bus to Niagara Falls, and will attend the Brampton Walk on May 18. Have you booked your seat yet? There is an online registration spot if you want to join in, but you can also send me a cheque or pay via PayPal if you want. Just let me know in time, please, so that I can secure the bus.

As the last thought: My dear friends who read here on this blog from time to time, thank you for being on the journey with me. Without your support I wouldn't be doing very much of anything. Thanks for your acceptance and for sharing your lives with me, for helping and volunteering and cheering along, donating your time, giving me a gift of yourself. 

Christmas greetings - stories, pictures and news of the year

Hello! So glad you stopped by! If you dropped in because you received our digital Christmas greeting, thank you for taking the trouble. If you want to keep tabs on when this blog is updated (very infrequently), you can either "follow" on the right, or just put your email address in the space on the right side. When a new post is added, you'll receive an email notification and can then stop by at your leisure.

Some updates about our year, 2011, with a few photo links are below if you want to browse!

Bigger version is HERE (this page will stay open)

About our news and updates --- I'll just pick a few items, but this is easier than sending lots of emails around.
Please scroll down the blog archives (links on the right) if you want to read more entries or posts, see the picture of my medication, look at pictures taken at the Lyme Disease conference in Toronto, and so on.

RECAP
In January I was told by a doctor that the whopping doses of antibiotics I injected daily directly to the bloodstream via a permanently implanted IV line (PICC), was "going to kill me" because my body had turned toxic or something. I had to stop the medicine. This was supposed to be the last push in the treatment for Lyme disease, which was started in April 2010 after being sick since August 2007 with some "unknown disease".

In February the Lyme specialist pulled out the PICC line, saying he would have to do some research to find out what sort of combination medications he can give me. I have been off the medication for a month by then, and symptoms were coming back fast and furious. Pain, confusion, balance problems, cognitive problems, neuralgia, anxiety, depression, all sorts of infections, lack of appetite, being cold all the time, extremely dry skin - to name just a few. Costochondritis (a painful condition because of infection in the joints of the rib cage) was also diagnosed then and is still not gone.

In March I went back to see the specialist and received a tremendous blow: He could no longer treat Lyme disease. Another doctor had lodged a complaint against him for "treating a disease which doesn't exist in Canada". I was set adrift, like hundreds of other Lyme disease patients. Doctors are being forced out of practice. In the USA, four states have now adopted legislation to protect doctors against prosecution if they are treating Lyme disease.

In the meantime, Arno developed a "blister" on his right eye. There is a leaking vein which deposits fluid on the lens, and makes it difficult to focus. It went away after a few months, but came back. In November he had cold laser treatment to try and seal off the leak. We have to wait several weeks to see if the fluid was re-absorbed. It is not painful, but just annoying when trying to focus on close subjects.

He is looking after me with care and concern, and I'm very appreciative. When I located a doctor in the USA who was willing to take me on as a Lyme patient and arranged to see me as quickly as possible, Arno took the time to drive me the 7 hours, through pouring rain, fog, hydroplaning car and unknown roads to visit. During that visit, I was also diagnosed with co-infections called Babesia and Bartonella. There should be more in this blog to read about that. I am now officially battling Chronic Lyme disease.

In May we took two weeks holidays for the first time in our lives! We flew down to Florida and spent four days in Orlando, visiting the Animal Kingdom and Seaworld, petting cownose rays and enjoying the creatures and the plants we love so much. Of course we took in a few roller coasters as well! A few pictures are here. 

Arno at Animal Kingdom

We spent a few days in Daytona Beach which we found beautiful and would love to go back to! From there we drove to Miami, with a detour to Cocoa Beach, and flew out the next day to Puerto Plata in the Dominican Republic.

While there, we stayed in a resort, but scheduled 6 SCUBA dives, spread over three days. We had to have a day in between, since after an excursion, I was sleeping 8 to 10 hours and had to have a day to recover! We loved it, the dives were great and we also managed some parasailing, something I've always wanted to do.

Someone took this pic of us

The new medication, as well as a severely restricted diet the doctor put me on in order to starve the Lyme disease bugs, made for interesting episodes, weakness, diabetic collapse and the like. Once again, Arno was a champion, looking after me, asking restaurants for special attention, and generally taking the responsibility of something I used to do for myself. I'm grateful to have him. Without that, I would have been a great mess!

Theo (our youngest) and Jenni are planning their wedding for August 2012. She is still studying - graphics design since she wants to be an illustrator for Children's books - and wants to finish her studies first. She just put up a site with some of her work. Click on the gallery link to see samples!  Jenn's Illustrations

Jaco decided to take a break from his studies and joined us working at the computer office in Bolton. He is doing a great job and we are all glad to have him there! He is doing inside work, removing viruses, helping to set up computers, writing a program to help us track time and jobs. Then ---- he fell off a ladder while alone in the workshop and broke the heel on his right foot! He was on crutches for 6 weeks, but seems to be back in good health now.

In September we had the Brampton Fall Fair again. I've been the Photography Convenor for a number of years now and am enjoying it tremendously. It saps energy, but is well worth the effort. That is the one volunteer position I didn't give up because of this miserable disease!
Those who like to look at pictures, they were divided into four days. I'll give the links below if you want to play. Day 2 is the one where I got to hold the big Bald Eagle.

• Fall Fair Day 1 - setting up and judging
• Day 2 - some of the exhibits and the Bald Eagle
• Day 3 - more entries and pictures of the Falcon show
• Day 4 - the horses and a guy making fantastic balloon creatures

In September I also turned 50. With the Fall Fair right across that day, I didn't even think about it. But Arno and our friends concocted a surprise party --- and what a surprise it was! Thank you again, everyone, for your love and support!

As a sudden inspiration, long-time email friend Amanda and husband Paul came to visit. Of course we had to take them to Niagara Falls, have them taste icewine, see the lovely town of Niagara-on-the-Lake, visit quaint St. Jacobs with the fabulous craft of the Mennonites, and admire the landscape, farmlands and beauty of southern Ontario. More pictures are HERE if anyone wants to look.

Our summer visit at the cottage belonging to friends, is always a highly enjoyable part of our summer, and we are grateful for the privilege. Sitting on the dock, looking at loons, watching the sunset and the sunrise, sipping coffee in the fresh air, sharing cooking duties --- peaceful restoration, recharging of batteries. And of course having some tubing on the lake as well! Pictures.

In November I saw the Lyme specialist again. She changed my medication (more info in the blog, under November 21). Arno has to sort out all the pills and supplements, since I get completely confused. At the moment my brain is acting as in the early stages of Alzheimer's. We're doing all we can to reconnect pathways and to stimulate the brain to heal itself. But sorting out more than 45 pills per day is mind-boggling at the moment! Not to mention cooking --- our electric rice cooker is one of the best things we ever bought. We eat a lot of stews and soup, steamed veggies and brown rice with pan-seared chicken or pork, or meat on the bbq (braai). Arno is enjoying having Jaco at home again, since the two meat-eaters can indulge a little!

Theo is doing lots of cooking and baking. His shortbread cookies are divine and in high demand for Christmas. He has been baking beskuit, makes pizza, has a fabulous potato soup and other things he makes regularly. Wonderful to see the boys being young men, and enjoying each others company.

This is enough gabbling - sorry if it bored you, but hope you are caught up a little about our lives! Working two jobs (two days a week at the church and three days a week at the computer place), keeping doctor's appointments and trying to get enough energy together to do some housekeeping seem to take more time than it did before.

Blessings to you and yours for Christmas. And thank you for keeping in touch, even if I'm bad at following up these days. Hopefully that will pass in another two years or so after treatment.

Christmas wishes

Healing Prayer Meeting

There is not much time to update the blog, but this graphic was quickly made, from a gift given today, and the greater gift of a group of friends taking time from their own busy lives to share in a healing prayer meeting for me. My appreciation can not be expressed, for all the care and concern so freely and warmly given.